Researchers are out in force. They want your input and information. Finally, you exclaim, someone is willing to listen! After being ignored for years the opportunity to help shape understanding and policy is intoxicating. The recent increase in veterans’ medical and social policies means that, for many, they are having their opinions and information sought after for the first time. The experience may be as an individual, veteran, family member, and / or group. Veterans’ input is invaluable and the situation is ripe to influence the future. But veterans need to protect your privacy.

In this blog we will broadly outline the basics of ensuring any researcher, organization, or other entity will treat you appropriately if you choose to be part of their research. As a disclaimer I will state out right, most academics and organizations have clear ethical guidelines and are concerned with maintaining the privacy of your information. It is in their best interests to do so. However, vigilance is your responsibility and I reiterate that what follows is only the basics.

The Researcher Know who you are dealing with directly and indirectly. The person you are dealing with may not be the primary researcher. Researchers should contact you directly – not through a third party – but in fact, it is common practice to have graduate students do the interviews or field work. With this in mind, ask:

Who are you dealing with?

Who is the primary researcher including name and education level?

What is the primary researchers rank (Full, Associate, or Assistant Professor or student)?

What university or institute are they associated with? In which department, school or program do they serve?

What is their contact information (phone number, e-mail address, office address)? Knowing this allows you the participant to quickly and easily withdraw should you so desire.

Who is conducting the research on behalf of the primary researcher? Why?

What is the name of the study? Studies or research always have a name and are well defined. The primary researcher will have a the following information:

Name of the study

Key words associated with the study

A the design of the study

The research methods used in the study

Research Ethics Board If the researcher has not gotten approval from a Research Ethics Board (REB) then wait until approval has been granted. The purpose of the REB is to ensure that the research falls within acceptable guidelines and does not violate privacy or create harm to the participants. It is also an opportunity for those outside of the research to help improve the quality of research. Ask which REB the researcher sought approval from. Typically, if the researcher is at a university or a reputable organization, an REB exists. Ask the researcher to provide the REB contact used.

Participants As a “participant” you might want:

A description of the population … do you fit?

How many will the researcher be contacting?

On what basis have the participants been selected?

How will participants be contacted? This includes all aspects of social media, word of mouth, email lists, traditional media, etc.

Is the participant involved with the researcher in some way? If so what is the relationship? Can the relationship involve a power issue? For example, if you do / do not participate will the researcher be able to sway what you do and say in the future?

As a participant you can answer all, some or none of the questions. You are never under any obligation what-so-ever to answer questions. Remember this is not a court room or a police station.

Organizations Organizations will require expressed permission from you the participant in research. For example, your veteran organization should not just state that they will be conducting research and that you should participate. Such an example is a clear exploitation of a power relationship. The organization requires your written permission to conduct such research.

An Invitation to Participate Form At this point, all veterans usually know that “paperwork will follow” is not acceptable. An Invitation to Participate Form is a standard method used to explain the purpose and methods of the study. You can provide verbal consent but the best option is always paper or an email.

The offer to participate should be sufficient to allow you to consider and decide if you want to participate. Even after you participate there should be a clause in the agreement that allows you to withdraw you, your information. or parts of the information.

Nature and purpose of the study

What are the objectives of the research?

What is required from participants? A private interview, a group interview, a family interview, participation in a physical activity, participation in a medical/pharmacological/psychological study, or access to your private files.

What is the “structure” and methods of the research? Not all methods are equal when it comes to privacy. Look for gaps in logic. For example, a researcher cannot guarantee you anonymity if there is a group interview. The researcher may never say a word and tightly control the data, but the researcher cannot control what the other participants say after the interview. Therefore, the researcher cannot ensure anonymity.

What will be done with the data? Will ownership of the data be transferred to another entity? This is important if you are dealing with medical information. Do you want your medical information shared throughout the medical research community? Where will the researcher “hold” the information and in what form? “Where” really counts these days because if your information leaves the country you have lost control of the data. The form is important as well. Will the researcher use electronic, paper, or some other means? Given that electronic data is easily transferred you might consider this list of questions: Will the information be held off-line, on-line; be held by the researcher or a data center; data held in Canada, out of Canada; will the data be used by anyone else if so who; how will the data be transferred; how long will the data be held; when, or if, will the data be destroyed? Will the data be anonymous? If so, how do you guarantee anonymity? Transcripts If you are interviewed you should receive, or be given, access to your transcripts. Who did the transcripts and how is this person bound to maintain confidentiality?

Plain language The use of “plain language” is required. Information must be provided to participants in a form that they will be able to understand easily – otherwise how do you give your consent?

Deception A common research technique is called deception. If deception is used it must be indicated in the Invitation to Participate form. Costs Potential costs—physical, psychological, or social—to the participants (not including time or effort) should be clearly identified. For example, will the questions upset the participant, cause physical pain or social harm? If so, they must be clearly identified and the remedy to these issues be provided. Compensation Will you be compensated? It seems hollow to demand payment but consider this: if you have to travel, even across town, you might receive an honorarium for travel. Your time and information is valuable and any compensation should be clearly laid out in any signed research agreement.

Distribution of the findings Ask what the data you as the participant are providing is going to be used for. Participants are entitled to the findings of the research. It is not uncommon to have the paper or book abstract sent to the participants.

How is the research funded? This is a valid question. You might want to know the exact title of the project associated with the funding, the funding source, the funding opening and closing date.

The information you have as a result of your experiences is invaluable. We as a community must engage with researchers to improve our situation and the situation of those that come after us. But care for your privacy. The decision to participate in any research, and the privacy challenges created, lies with your careful decision.